Mythbusters: Caregiver Grief Edition

by | Sep 5, 2024 | Uncategorized

There are many myths and misconceptions about caregiver grief and about bereavement in general. Often, these myths come from societal or cultural beliefs about death and dying, and have been around for a long time. However, these beliefs are not always based in facts and can sometimes lead to unrealistic expectations around grief.    To counter this, this blog post will shed light on some of these myths so that we can all be more aware and sensitive of the experiences of grievers.    Click through some of the most common caregiver grief myths below:

  • Myth: You are no longer a caregiver since the person died
  • Reality: Your role and identity as a caregiver does not disappear when the person you are caring for dies. That part of you does not get erased with the death of that person. Your caregiving experience has likely impacted you in many ways and will always be a part of who you are.
  • Myth: Bereavement should be less painful for a caregiver since the death was expected

– Reality: Even if you expected that the death would happen (due to illness, decline in health, or medically assisted death) or experienced anticipatory grief, this does not make the death less painful. As described by Therese Rando, “A rehearsal is not the real thing.” (Rando, 1988, p. 70) Many caregivers often describe feeling surprised and shocked even when they expected the death and thought they were prepared for it. This does not make it any less painful or challenging in bereavement.

  • Myth: Grieving means letting go of the person who died and moving on
  • Reality: After being a caregiver for an extended period of time, you and others in your life might expect you to ‘let go’ of that person, put them in your past and ‘move on’ with your life. However, the truth is that we cannot simply ‘let go’ of a person and our relationship with them continues even when they have died. Grieving does not mean that we need to forget about that person, but that we are learning how to adjust to life without their physical presence. 

 

  • Myth: After caring for someone for a long time, caregivers should feel relieved to have their life/time/schedule back when the care recipient dies
  • Reality: After the physical, mental, emotional, social and financial implications of caregiving, it is possible for you to feel a sense of relief when the care recipient dies. If the care recipient was ill, many grievers feel a sense of relief that the person is no longer suffering. This can be normal. However, you may also not feel relieved, and may also feel relief as well as many different emotions. There is no “right” way to feel and there is no single emotion that a person “should” feel. The experience of each caregiver is unique and valid in light of their circumstances.
  1. Myth: Caregivers are only grieving the death of the person they were caring for
  • Reality: Oftentimes, you may be grieving many losses at the same time and these can become compounded. These can include the:
    • Death of the loved one
    • Loss of the relational identity (as a partner, child, sibling, friend, etc.)
    • Loss of the caregiver identity
    • Loss of a sense of meaning and purpose
    • Loss of support 
    • Loss of time
    • And many more…

These losses can also feel more intense during significant holidays and anniversaries.    The myths described above are just a few of the many false beliefs about bereavement. Because of these myths, caregivers sometimes feel that what they are experiencing is not “normal” or they may not want to speak about it with others out of fear of judgement. This can lead caregivers to feel even more isolated and make it harder for them to adjust to the death.    Instead, we now know that grief is not predictable or time-limited and can manifest in many different ways and areas of a person’s life. There is no “right” way to grieve. When beliefs about grief are restrictive and prescriptive, they can lead to unrealistic and unhelpful expectations.    With each individual’s bereavement experience being unique, it is important to recognize and make space for the different realities of caregivers. By dispelling these myths in yourself and in conversations with those around you, you are helping to create more compassionate communities.

What other myths are there about caregiver bereavement? 

How bereavement is different for caregivers

by | Aug 19, 2024 | Uncategorized

When a person takes on the role and responsibilities of caregiving, their entire life is affected. Sometimes, the relationship between the caregiver and care recipient can become unbalanced because of the level of dependency and need (Orzeck, 2016). In some cases, caregivers spend many years caring for someone who is in a vulnerable state and reorganize their lives to revolve around the caregiving role.

Research has shown that caregiving can have impacts on a person’s physical, emotional, and mental health (Bom et al., 2019). Depending on the situation, some caregivers also reduce or stop working or engaging with their social network to redirect their time and energy towards caregiving. Sometimes the withdrawal from their regular routine is out of exhaustion or self-preservation, and it can be a conscious decision or not. This withdrawal from their regular routines can increase social isolation, which can negatively impact their grief experience (Breen et al., 2020b).

Research also shows that the caregiving trajectory can change the caregiver’s identity in many ways that can be profound and sometimes irreversible (Orzeck, 2016). The person’s sense of purpose and meaning in life can become tied to the caregiving role. Depending on the circumstances, caregivers may have also already experienced [ambiguous loss] while the person they were taking care of was still alive, which refers to losses that are unclear or without closure (Boss, 2010).

Furthermore, the impacts of caregiving do not end when the care recipient dies. Post-caregiving refers to the period after which the provision of care has ended. The post-caregiving phase brings its own set of challenges that caregivers may face, including coming to terms with their losses, adapting to the new reality, and re-building their lives and identities. The caregiving role and identity can feel overwhelming in some cases and it can be very difficult for caregivers to adjust to the death.

The experiences of grief and bereavement are always difficult, highly personal, and different for everyone.

They are not predictable or time limited.

However, bereavement of a loved one is experienced differently by caregivers as opposed to people who were not involved in the caregiving component (Breen et al., 2020a).

In an Australian research study that compared the grief, quality of life (QoL), and general health of caregivers in relation to non-caregivers, the findings demonstrated a significant impact on the bereavement experience pre and post-death. Compared to non-caregivers, caregivers’ “grief while caring was comparable to that at 3–4 months post-death, and it took 9–10 months post-death for caregivers’ grief, QoL and general health to return to a normative standard.” (Breen et al., 2020a, p. 150-151) It can take much longer for a caregiver to adjust to the changed reality and rebuild their life because of all that they have experienced.

The loss of both the relationship with that person and the caregiver role can create a set of circumstances that impact grief. In addition, the intensity of caregiving and the withdrawal of the care teams when the care recipient’s file is closed after death can lead to the bereaved caregiver feeling alone.

It is also possible that bereaved caregivers may experience compounded losses due to the potentially numerous personal losses and sacrifices made over the caregiving trajectory.

“In post-caregiving, the loss of a loved one was combined with the loss of the caregiver’s daily sense of purpose and function, as well as the loss of the social network related to the caregiving.” (Orzeck, 2016, p. 155)

After having adjusted their lives partially or completely in order to care for their loved one, caregivers must then adjust again to a changed sense of self in bereavement. In some cases, this requires that the caregiver re-evaluates their roles and rebuilds the life they want to lead after the loss (Holtslander et al., 2017).

For caregivers who have spent a long time advocating for the care recipient within healthcare systems, the caregiver may have become used to focusing the attention on the needs of others. Unfortunately, this means that caregivers sometimes neglect their own needs (including medical check-ups and follow-up, and accessing support services for themselves). The caregiver may also have been viewed and treated by the healthcare teams as a proxy to the care recipient, not an individual with their own needs and experiences. These losses over time can make the challenges of bereavement more difficult.

Factors impacting bereavement

Of course, the experience of every caregiver is different and can be influenced by many factors. In a summary of research on the experiences of bereaved family caregivers, Holtslander et al. (2017) noted that the impact of caregiving on bereavement also varies depending on these factors:

  • the type of relationship between the caregiver and care recipient
  • the nature of the illness and death
  • the nature of the caregiver’s good-bye to the care recipient
  • the pre-planning for the loss
  • the perception of ‘having done one’s best’
  • the perceived satisfaction of experiences with health care staff throughout the
    caregiving journey

Aspects of social identity, such as gender and sexual orientation, can also impact the bereavement experiences of the individual (Holtslander et al., 2017).

Overall, although grief and bereavement is challenging for everyone, the experience is different for caregivers as opposed to people who were not in a caregiving role. Because of this, caregivers may not always feel understood by others in general grief support services or groups. It is especially important for family members, friends, communities, and health and social service professionals to be aware of and sensitive to this difference in providing support to bereaved caregivers.

If you are a bereaved caregiver, it may also be important for you to recognize your unique experience with this grief. Know that you are not alone in feeling this way and there are resources available. Caregiver Grief Connexion was created to recognize the unique realities and experiences of bereaved caregivers, and our mission is to increase support through sharing knowledge, skills, and resources.

To learn about myths on caregiver grief, click here 

To access resources for caregivers, families & friends, professionals and care providers, click here.

Has your bereavement experience felt different for you because you are a caregiver? Share your experience below:

This blog post was adapted from a report written by the CGC team titled Challenges Facing Bereaved English-Speaking Caregivers in Quebec: A Review of the Risks and Protective Factors for the OLMC. A report prepared for the Community Health & Social Services Network (2022).

References
Bom, J., Bakx, P., Schut, F., & Van Doorslaer, E. (2019). The impact of informal caregiving for older adults on the health of various types of caregivers: A systematic review. The Gerontologist, 59(5), e629-e642. https://doi.org/10.1093/geront/gny137

Boss, P. (2010). The trauma and complicated grief of ambiguous loss. Pastoral Psychology, 59(2), 137-145. https://doi.org/10.1007/s11089-009-0264-0

Breen, L. J., Aoun, S. M., O’Connor, M., Johnson, A. R., & Howting, D. (2020a). Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study. Palliative Medicine, 34(1), 145–154. https://doi.org/10.1177/0269216319880766

Breen, L. J., Kawashima, D., Joy, K., Cadell, S., Roth, D., Chow, A., & Macdonald, M. E. (2020b). Grief literacy: A call to action for compassionate communities. Death Studies, 46(2), 425–433. https://doi.org/10.1080/07481187.2020.1739780

Holtslander, L., Baxter, S., Mills, K., Bocking, S., Dadgostari, T., Duggleby, W. & Peacock, S. (2017). Honoring the voices of bereaved caregivers: A metasummary of qualitative research. BMC Palliative Care, 16(1), 1-18. https://doi.org/10.1186/s12904-017-0231-y

Orzeck, P. (2016). Identities in transition: Women caregivers in bereavement. Journal of social work in end-of-life & Palliative Care, 12(1-2), 145-161. https://doi.org/10.1080/15524256.2016.1165162

Phases of caregiving 

by | Aug 13, 2024 | Uncategorized

Caregiving is not always a linear or predictable process and it is sometimes difficult to notice the changes that are happening in your roles. It’s helpful to learn about the caregiving trajectory or path to make sense of your experience.  Generally, the caregiver role emerges slowly from a role that existed before (such as a spouse, child, sibling, parent, friend, neighbour, etc.) (Orzeck, 2016). That role was part of a relationship between two people where there was an initial balance of roles and responsibilities. That balance changes when one person in the relationship needs care. As that person requires more and more support (an increase in the quantity and intensity of care), the other may take on these care tasks as part of their responsibilities.  Sometimes, the level of need remains the same but can last many years, as with a chronic condition. These shifts in the relationship also impact the personal identity of the caregiver and the care recipient.  However, before considering the phases of caregiving, there are a few key points to remember. 

  • It is important to recognize that your experience is unique, as unique as the relationship you have with that person. Even if you have had experiences with caregiving and with death in the past, the particular circumstances of this caregiving role and relationship are different. Comparing yourself to other people is often not representative of your experience, and may be unhelpful.
  • The caregiving trajectory can begin slowly, however, it can also begin very suddenly. In situations where there is a sudden change in a person’s health condition (such as a stroke, an injury, an accident, or an infant born with a life-limiting condition), one can be very rapidly thrust into a caregiving role. While the earlier phases described below may not apply in these cases, the impact of caregiving on the caregiver’s identity and on post-caregiving bereavement are still relevant.

In order to try and make sense of the role and identity changes that a caregiver might experience, it may be helpful to consider the caregiving trajectory in phases (based on Montgomery & Kosloski, 2012). These phases are not unidirectional, meaning a person can move between phases in either direction depending on their circumstances, and they are not time limited. There is usually a significant amount of stress for the caregiver due to the new and unknown aspects of change. It is important to remember that although this representation can illustrate the progression of the impact of caregiving, it may not be representative of your experience.  Figure 1. Phases of the caregiving trajectory Phase 1: A partner, child, sibling, friend, etc. begins to help the other with some tasks that were not initially part of their role. The shift in responsibility for these tasks leads to minor changes in the balance of roles and relationships. Examples can include giving the person reminders of daily activities, calling them to check-in more frequently, accompanying them to the occasional medical appointment, etc. Since these tasks represent small changes, caregivers likely do not recognize this new caregiving role yet. They retain their main identity as the partner, child, sibling, or friend in the relationship, with the caregiving only representing a small slice of their role (see figure 1).

Phase 2: The caregiver (partner, child, sibling, friend, etc.) begins to take on more tasks that are beyond their regular scope of responsibilities. There is a larger shift in the balance of roles and responsibilities between the two people. Examples of this phase can include organizing and coordinating health care services, grocery shopping, etc.   At this point, the caregiver may begin to recognize the changed reality and their new caregiver role, but they still maintain their regular identity as the partner, child, sibling, or friend.  Phase 3: The caregiver (partner, child, sibling, friend, etc.) is now actively involved in the caregiving role as the needs of the other increase. This requires a much larger time and energy commitment from the caregiver and there is a noticeable shift in the balance of roles and responsibilities in the relationship. Examples of this phase can include doing some household chores, preparing meals, continued coordination of health care, help with managing finances, etc. This caregiver role often takes time away from the person’s other roles, hobbies, and relationships, influencing their identity significantly. Phase 4: At this point, caregiving is a significant commitment due to the intensity and quantity of the care recipient’s needs. Caregiving often becomes the caregiver’s main role and identity because of how consuming it is physically, mentally, emotionally, socially, and even financially (see figure 1). Examples of this phase can include preparing meals, doing all household chores, general home maintenance, managing their finances, helping the person with dressing, showering, toileting, eating, mobility, etc.  Phase 5: This phase is when the caregiver is no longer responsible for the care recipient’s care anymore because of a change in the situation. In some instances, this change might be a move to a residential care setting or facility. However, placement in a care facility does not always lead to the caregiver feeling relieved of their caregiver role or responsibilities.  Another change that can lead to the caregiver no longer being responsible for care anymore is the death of the care recipient. This change can be a shift back to the initial role that the caregiver had as a partner, child, sibling, friend, neighbour, etc. of the person they were caring for. This is when the post-caregiving phase begins.  Post-caregiving: Post-caregiving refers to the period after which the provision of care has ended. This can be due to the death of the care recipient or other life circumstances (such as a move to a care facility, or a change in circumstances). This website is focused specifically on post-caregiving, because caregivers continue to be impacted by their role within and beyond the active caregiving phase.  Many people wrongly assume that the needs of the caregiver disappear after the death and they can now ‘move on’. In reality, caregivers continue to require support. Bereavement and grief are also different for caregivers compared to people who were not in a caregiving role. Post-caregiving is an important part of the caregiving trajectory and should be considered as such. 

What have you learned about post-caregiving that you did not know before?

Share your experience below.

References

Eifert, E. K., Adams, R., Dudley, W., & Perko, M. (2015). Family caregiver identity: A literature review. American Journal of Health Education, 46(6), 357-367. https://doi.org/10.1080/19325037.2015.1099482 

Montgomery, R. J., & Kosloski, K. D. (2012). Pathways to a caregiver identity and implications for support services. In Caregiving across the lifespan: Research• practice• policy (pp. 131-156). New York, NY: Springer New York. https://doi.org/10.1007/978-1-4614-5553-0_8 Orzeck, P. (2016). Identities in transition: Women caregivers in bereavement. Journal of social work in end-of-life & Palliative Care, 12(1-2), 145-161.   https://doi.org/10.1080/15524256.2016.1165162  

How do I know if I am a caregiver?

by | Jul 4, 2024 | Uncategorized

Before reading this article, take a moment to think about what the word caregiver means to you.

When you hear the word caregiver, what images come to mind?

What tasks do you think a caregiver does?

Definition

Many people do not identify themselves with the word caregiver because of beliefs and assumptions about what a caregiver is. Sometimes these beliefs are based on the relationship between individuals (such as, spouses for caregivers, or adult children for their parents), the type of care being provided (such as, a person must do physical tasks like giving medication or personal hygiene care to be a caregiver), or the frequency and the amount of time that care is provided.

People will often say that they are not a caregiver because they are ‘just doing what they are supposed to do’ for their family member, friend, neighbour, etc., or they only help out ‘every now and then’. You might feel unsure about whether you are a caregiver.

In reality, the definition of the term caregiver is quite flexible. Below are a few definitions:

 

Government of Quebec

“Any person who provides support to one or more members of their immediate circle who has a temporary or permanent physical, psychological, psychosocial or other disability, regardless of their age or living environment, and with whom the person shares an emotional bond as a family member or otherwise.

The support is continuous or occasional, and short- or long-term, and is provided on a non-professional basis and in a free, informed and revocable manner in order, among other things, to promote the care recipient’s recovery and the preservation and improvement of his or her quality of life at home or in other living environments.

It may take various forms, such as transportation, assistance with personal care and housekeeping, emotional support, or coordination of care and services. The support may also have financial repercussions on caregivers or limit their capacity to take care of their own physical and mental health or fulfill their other social and family responsibilities.” Source

Government of Canada

“A caregiver is a family member or someone who is considered to be like family providing care or support to the person who is critically ill or injured or needing end-of-life care. Care is defined as participating in the care of a critically ill or injured person or someone needing end-of-life care. Support is defined as providing psychological or emotional support to a critically ill or injured person or someone needing end-of-life care.” Source

Canadian Centre for Caregiving Excellence

“Caregivers provide support to people with physical, intellectual, or developmental disabilities, medical conditions, mental illness, or needs related to aging. Caregivers are family, friends and other natural supports (like neighbours or chosen family) who provide care because of a relationship, not as a job or career. The caregiver role is mutually determined by the person and their caregiver(s).” Source

A care recipient is the person who is receiving the care. Caregivers can be of any age and any relationship to the care recipient. Examples of caregivers can be:

  • A partner caring for a partner with dementia
  • A sibling caring for their sibling with Down Syndrome
  • A child or young adult caring for their parent who is ill or has a disability
  • A parent caring for their child with an illness or disability
  • A person caring for a member of chosen family or community who has Multiple Sclerosis
  • A friend caring for a friend with cancer
  • A neighbour caring for a neighbour

The roles of caregiver and care recipient are also flexible, meaning that the care recipient can also provide care to the caregiver. Caregiving is based on an existing relationship, where reciprocity and mutuality are present.

There is also a difference between the terms formal and informal caregiver. Formal caregivers generally refer to health and social service providers who are trained and paid to provide health and social service related interventions and support. These paid support individuals can also be called care providers. Examples of health and social service professionals and care providers who may interact with caregivers include doctors, nurses, social workers, physiotherapists, occupational therapists, personal support workers, respite workers and many more. Informal caregivers do not provide the care as part of their job or career.

“I like to say that there are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers” – Rosalynn Carter, Former First Lady of the USA

Not only does the term caregiver encompass a lot more than what people assume, but there are also millions of Canadians who perform caregiving roles. It is difficult to provide exact numbers on the amount of caregivers across Canada because many people do not self-identify as caregivers. With all these different definitions, it can be hard to know if you are a caregiver.

Why is it important to recognize myself as a caregiver?

Caregiving can have impacts on your health, personal, social, and family life, as well as your employment and finances. It can be important to recognize yourself as a caregiver because there may be support services and resources that exist in your area that are specifically geared towards supporting caregivers. If people do not identify as a caregiver, they may not learn about the myriad of supports that are available. Numerous organizations exist across Canada to support caregivers and advocate for recognition of their important role within our society.

For resources by province, see the Canadian Centre for Caregiver Excellence’s website: https://canadiancaregiving.org/caregivers/caregiver-resources/

If you are still unsure if you are a caregiver, speak to a healthcare professional or consult your local caregiver organization about your situation and needs.

What is a bereaved caregiver?

The term bereaved caregivers refers to caregivers who are grieving the death of the person that they were taking care of. Caregiver Grief Connexion is an initiative to share knowledge, skills, and resources on grief for bereaved caregivers, for their families, friends, and the health and social service providers who support them.

For information about bereavement and the post-caregiving phase, click here. [Links to blog post #2 on caregiving phases]

For statistics on caregiving in Canada:

For statistics on caregiving in Quebec: